Substantial Matters: Life & Science of Parkinson’s
200 episodes - English - Latest episode: 27 days ago - ★★★★ - 111 ratingsHow can people with Parkinson's live a better life today? Join the Parkinson's Foundation as we highlight the treatments and techniques that can help all people affected by Parkinson’s live a better life today, as well as the research that can bring a better tomorrow.
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Episodes
Swallowing Issues and Oral Care with Parkinson’s
March 14, 2019 20:37 - 14 minutes - 19.8 MBEveryone should practice good oral health care, but it is particularly critical for people with Parkinson’s disease (PD). Unfortunately, at the time of diagnosis, many people do not receive information about oral health problems that may arise later in the disease. Parkinson’s symptoms can complicate oral care at home and dental professionals need to be aware of their patient’s PD so that they can provide appropriate care at frequent intervals. In this podcast, Cameron Jeter of the dental sc...
Encountering Gender Differences: Women and PD Initiative
March 12, 2019 11:00 - 23 minutes - 31.3 MBGiven the differences women may encounter when dealing with their Parkinson’s Disease (PD), the Parkinson’s Foundation is leading the first national effort to address gender disparities in Parkinson’s research and care as part of an overall Women and PD Initiative. The Women and PD Teams to Advance Learning and Knowledge project (Women and PD TALK, for short) aims to develop new patient-centered recommendations to improve the health of women living with PD. Over the two-year term of the proj...
Parkinson’s Disease vs. Parkinsonism: What’s the Difference?
February 26, 2019 12:00 - 13 minutes - 17.9 MBIf a person develops symptoms of tremor, slow movements, and stiffness, it could be early signs of Parkinson’s disease (PD) but it may also be the beginnings of any of a group of conditions known by the general term “parkinsonism,” conditions that have some symptoms in common with PD but differ in important ways. Also called atypical Parkinson’s disease or Parkinson’s plus, they tend to progress faster, and they may or may not respond to levodopa, and possibly only show modest benefit. While...
Seeking a Second Opinion After a Parkinson’s Diagnosis
February 12, 2019 12:00 - 12 minutes - 16.7 MBFor a person newly diagnosed with Parkinson’s disease (PD), a second opinion from a movement disorders specialist can be a valuable endeavor. It may help to confirm the diagnosis, discover a different condition leading to the symptoms the person is experiencing, or address any lingering unanswered questions from the person’s encounter with the first physician especially if there was any discomfort with the interaction. In this podcast, Dr. Carlos Singer, Director of the Division of Parkinson...
Addressing Sleep Discomfort with PD
January 15, 2019 12:00 - 15 minutes - 21.4 MBMost people with Parkinson’s disease have trouble getting a good night’s sleep due to an inability to fall asleep, stay asleep, or get back to sleep if awoken at night. Causes of this sleep discomfort may be a combination of symptoms of the disease, medications to control those symptoms, a poor sleep environment or bedtime habits, and changes in the brain that can affect mood, thinking, and the sleep-wake cycle. Fortunately, there are things that people and their health care providers can do...
Patient Engagement in Research: The Parkinson’s Advocates in Research Program (PAIR)
January 01, 2019 12:30 - 17 minutes - 23.5 MBMedical research is a long and complicated process. Discovering the underlying causes of Parkinson’s Disease (PD), finding new treatments, or searching for a cure involves laboratory work, animal testing, and clinical trials with control subjects and then people with Parkinson’s. One important way to facilitate that research is to involve people affected by PD. The Parkinson’s Advocates in Research program (PAIR) at the Parkinson’s Foundation trains people with PD and caregivers to become in...
Talking to Children About PD
December 18, 2018 12:00 - 14 minutes - 19.2 MBReceiving a diagnosis of Parkinson’s disease, especially when it occurs at an early age, can be seen as disrupting an entire life plan. But it doesn’t have to. Soania Mathur, MD, CCFP, a family physician in Toronto, Canada, was diagnosed with young onset PD at age 27, just when she was starting her own medical career, as well as starting a family. She has developed some views on raising children when a parent or other family member has PD. In this second episode of our two-part Holiday Serie...
Parenting and PD: Raising Children While Living with PD
December 04, 2018 12:30 - 17 minutes - 23.9 MBParenting has its challenges and surprises under the best of circumstances, but when a parent has Parkinson’s disease, it can put added stresses on the family, both for the parents and the children. As parents’ abilities and roles change, children need to come to understand the disease, how it may change their routines, and the potential need to take on additional responsibilities. Today we kick off our first of two episodes in our Holiday Series: Families and Parkinson’s, as we interview So...
The Benefits of Music Therapy for PD
November 20, 2018 12:00 - 16 minutes - 23.3 MBThe benefits of music therapy for Parkinson’s disease have been well established over the years. Rhythm and rhythmic cuing can help with initiation, coordination, and maintenance of movement. Benefits can extend to cognitive functions, communications abilities, and mood. As established professionals, some music therapists have furthered their education as academically trained professionals specifically in working with people with Parkinson’s. Music therapist Dr. Concetta Tomaino, Executive D...
Palliative Care as Supportive Care in PD
November 06, 2018 12:00 - 13 minutes - 19.6 MBPalliative care is not often thought of in relation to Parkinson’s disease, but as people understand its relevance and benefits, more people with Parkinson’s are adding it to their usual care. Palliation means to ease the burden of the symptoms of a disease, whether that burden is physical, emotional, or spiritual, and that burden can extend beyond the person with the disease to caregivers. Benzi Kluger, MD, MS, director of the University of Colorado’s Neurology and Supportive Care clinics, ...
Dance Therapy for PD
October 23, 2018 11:00 - 17 minutes - 21.6 MBBesides medication, people with Parkinson’s disease can benefit from many other forms of therapy, including physical, occupational, speech, music and art therapy. One form of therapy they may not be as aware of is dance/movement therapy (DMT). It is provided by certified dance/movement therapists and may be covered by insurance. DMT is based on the idea that changes in the body affect changes in the mind and vice versa. Evidence supports the assertion that the mind, body, and spirit function...
PD Across Race & Ethnicity: Outreach to the African American Community
October 09, 2018 11:00 - 14 minutes - 20.2 MBWhile Parkinson’s disease (PD) affects all races and ethnicities, not all communities recognize the disease equally. There is a perception in the African American community of PD as a disease attributed to older white men, and thus people may delay getting a diagnosis and help, leading to greater disability. These misperceptions may exist among healthcare professionals as well. Dr. Reversa Joseph, a movement disorders specialist and Adjunct Assistant Professor of Neurology at the Ohio State ...
More Than a Movement Disorder: Addressing Mood and Coping
September 25, 2018 11:00 - 13 minutes - 17.7 MBParkinson’s disease (PD) is more than a movement disorder. While motor symptoms may be a prominent outward symptom of PD, mood and other emotional changes are also common- and not just for the person with PD. Their care partners may also experience such changes. Often, the best way to recognize these problems and figure out coping strategies may involve other health professionals in addition to a movement disorders physician, such as social workers or psychologists. Licensed Clinical Social ...
Mental Health in a Medical Setting
September 11, 2018 11:30 - 13 minutes - 17.8 MBMental health issues are often a part of a chronic disease such as Parkinson’s, but no one comes into a disease as a blank slate. They bring with them their whole being – their relationships, anxieties, social and personal experiences. Therefore distress in the setting of a disease should not only be ascribed to having the disease but should also take the whole person into account. In this podcast, Licensed Clinical Social Worker Kara Barton, a clinical instructor at the University of Southe...
Depression in PD
August 28, 2018 11:30 - 18 minutes - 24.7 MBDepression is common in Parkinson’s disease (PD) and may manifest itself in different ways for each individual. While the core symptom is a negative mood, other symptoms may be variable and can include changes in sleep, appetite, energy, or pain. These symptoms may overlap with the PD itself, making it difficult for the person with PD or even healthcare providers to recognize the depression. In this podcast, movement disorders specialist, Irene Richard, a professor of neurology and psychiatr...
Preclinical Models of PD
August 14, 2018 12:00 - 15 minutes - 22.3 MBBefore therapies make it into clinical trials, they undergo a series of laboratory testing. These preclinical models of the disease may include animals, cell lines, or single cell organisms to help validate the success of a potential treatment. Additionally, preclinical models of Parkinson’s disease may help us to understand the mechanisms and the molecular or genetic pathways that control or interfere with normal and abnormal functions. Understanding the underlying disease processes is crit...
New Pathways & Drug Development
July 31, 2018 12:00 - 11 minutes - 15.4 MBDeveloping medical treatments today for the most part depends on identifying a problem, whether it is physical, metabolic, behavioral or psychological and then targeting a treatment for that problem. Knowing what process causes a disease or symptom helps direct discovery of its potential treatments. In the case of Parkinson’s disease, modern techniques such as brain imaging, biochemical tests, and laboratory studies can reveal likely targets for designing new treatments. In this podcast, Mic...
The Parkinson’s Prevalence Project
July 17, 2018 12:00 - 13 minutes - 18.9 MBThe prevalence of Parkinson’s disease and parkinsonism has been on the rise since the 1970’s, but a true estimate of how many people are affected had been difficult to ascertain because of how we collected the early data. It is important to know the prevalence of the disease in order to allocate health care resources, including health care professional training as well as money for research into the conditions of PD. The Parkinson’s Foundation has taken a leading role in determining the prev...
The Development of the Parkinson's Outcomes Project
July 03, 2018 12:00 - 11 minutes - 16.2 MBThe mission of the Parkinson’s Foundation is to improve the lives of people with Parkinson’s disease (PD). Since each person’s experience with PD is unique, a wide range of factors must be evaluated to learn what the most effective treatments are, who can best benefit from each treatment or intervention, and how to help caregivers. Thus, the groundbreaking Parkinson’s Outcomes Project was begun in 2009. Through this study, the Parkinson’s Foundation’s Centers of Excellence track and monitor ...
Allied Team Training for Parkinson’s (ATTP®)
June 19, 2018 12:00 - 12 minutes - 17.5 MBThe Parkinson's Foundation is committed to working with health care professionals to improve the way care is delivered to families affected by Parkinson's disease. One way is through the Foundation’s signature program, Allied Team Training for Parkinson’s (ATTP), developed to increase knowledge of PD and build capacity for comprehensive interprofessional care in the treatment of Parkinson’s disease. Physicians, physician assistants, nurses, nurse practitioners, social workers, speech languag...
Team Care for PD: Why It’s Important
June 05, 2018 11:30 - 11 minutes - 15.9 MBParkinson’s disease is a complex condition, involving more than just movement. And to ensure the best outcomes and quality of life, people with PD should have a coordinated team of health professionals to help with their physical, social, and emotional needs. Since PD is a progressive disease, this array of health professionals can keep a constant eye on the changing condition and provide appropriate therapies as needs arise. Today, Lisa Mann, the nurse and education director for the Oregon ...
Home Care Program for Advanced PD
May 22, 2018 16:00 - 15 minutes - 21.4 MBMedical professionals have a lot to offer people in the early and middle stages of Parkinson’s disease. People with PD can visit their teams of doctors, nurses, social workers, and other health professionals on a regular basis in an office or clinic setting. A problem can arise, however, when determining how to best help people in the more advanced stages of the disease, when they develop more symptoms of greater severity and have limited mobility. Dr. Jori Fleisher of the Rush University Me...
Autonomic Problems
May 08, 2018 16:00 - 16 minutes - 21.9 MBAs people with Parkinson’s disease experience a variety of symptoms and challenges beyond movement problems, a comprehensive, team approach can benefit them with matters such as blood pressure drops, urinary symptoms, sleep disturbances, sexual and intimacy matters, and other quality of life issues affecting them and their caregivers. However, due to the associated stigma or potential feelings of embarrassment, people with PD may not bring these matters up with their clinicians. In this podc...
More Than Movement: Addressing Cognitive and Behavioral Challenges in caring for PD
April 24, 2018 16:00 - 12 minutes - 17.5 MBAmong the non-motor symptoms of Parkinson’s disease, cognitive and behavioral challenges also can be troubling and disabling. Medication, surgery, and other therapies can help alleviate motor symptoms, but the treatment of mental changes lags behind. Addressing cognitive, behavioral, emotional, and other neuropsychiatric issues may be daunting both for physicians and for the people with Parkinson’s whom they treat. Through a Parkinson’s Foundation grant, Dr. Jennifer Goldman has set up an In...
Medical Marijuana: Going Green for PD?
April 10, 2018 12:00 - 15 minutes - 21 MBMore and more people are exploring medical marijuana, also called cannabis, as a treatment option for various chronic health conditions, including Parkinson’s disease. Several states have legalized medical cannabis, but because federal drug laws have prevented scientific investigations on cannabis and its components for many years, much is still unknown about its use for medical purposes. Patients have questions about it, and physicians are still feeling their way through the landscape of me...
Meet the High School Student Who Is Changing Parkinson's Disease Diagnosis
March 27, 2018 16:00 - 15 minutes - 21.4 MBThere is no single, definitive test for Parkinson’s disease (PD). The diagnosis is made by an expert clinician who asks questions about a person’s health and medical history and observes their movement. But an enterprising high school student is working on a system that analyzes movements of facial muscles to make an early diagnosis and track Parkinson’s progression. Erin Smith of Shawnee Mission West High School in the Kansas City, Kansas, area adapted a real-time facial expression recognit...
Donate Your Brain for Parkinson’s Research
March 13, 2018 13:00 - 20 minutes - 27.6 MBDespite great advances in genetics and molecular biology, many aspects of research on diseases affecting the brain, including Parkinson’s, still depend on actual human brain tissue for study. How do researchers get these brains for study? They need you to become a brain donor! It is important for people with neurological diseases to donate their brains after death, but healthy brains are also needed for comparison. Brain retrieval must occur very quickly to be useful, so advance planning is ...
Back to Reality: Hallucinations and Delusions in Parkinson’s
February 27, 2018 13:00 - 13 minutes - 19.1 MBPeople with Parkinson’s disease may experience sensory misperceptions (hallucinations or illusions) or false beliefs (delusions). These tend to occur more in the later stages of the disease, and they can be mild and non-threatening or severe. Dr. Martha Nance, director of the Parkinson’s Foundation Center of Excellence at the Struthers Parkinson’s Center in Minneapolis, explains the causes of these symptoms, gives examples of how people with Parkinson’s might experience them and discusses co...
Do You See What I See? Hallucinations and Parkinson’s Disease
February 13, 2018 17:00 - 14 minutes - 19.7 MBHallucinations might not be something you associate with Parkinson’s disease (PD), but they are a possibility in PD and can be a big problem, especially as the disease progresses. Visual hallucinations are the most common, but auditory and other sensory hallucinations also may occur. At first, it may be easy to distinguish the hallucinations from reality, but over time they can become more distressing for the person with Parkinson’s and their family, as well as a challenge for medication man...
What Other Conditions Are Related to Parkinson's?
January 30, 2018 17:00 - 16 minutes - 23.2 MBParkinson’s is a complex disease with many symptoms that affect multiple parts of the body. These symptoms can lead to common complications, such as falls and food going down the windpipe into the lungs, causing pneumonia. At the same time, people with Parkinson’s disease (PD) are at risk for conditions that occur in the general population, especially as we age, including heart disease and cancer. Some conditions (i.e., diabetes) even seem to be associated with a higher risk of Parkinson’s. ...
Medical-Community Partnership for Parkinson’s Wellness
January 16, 2018 17:00 - 14 minutes - 19.4 MBThe Edmond J. Safra National Parkinson’s Wellness Initiative aims to build community hubs for people with Parkinson’s – outside the medical setting – to create more opportunities for exercise, connect people to support and educational resources and provide motivation to get out and be active. Founded ten years ago in New York and now expanded to Boston, Chicago, Tampa, FL, and Washington, DC, the initiative is a partnership between Parkinson’s Foundation Centers of Excellence and Jewish Comm...
Ask the Parkinson’s Foundation Helpline: Your Exercise Questions Answered
January 02, 2018 17:00 - 12 minutes - 16.6 MBExercise is an important part of healthy living for everyone, but for people with Parkinson’s disease it is more than healthy – exercise is medicine. Countless research studies have shown that exercise has benefits for both the body and the brain. But many people have questions about it – what to do, how to find the right programs, how to stay motivated, and even just what qualifies as a good form of exercise. These are some of the questions that come in to the Parkinson’s Foundation and tha...
Stall the Fall
December 19, 2017 17:00 - 13 minutes - 18.8 MBPeople with Parkinson’s disease (PD) are two times as likely to fall as other people their age. And while healthcare professionals recognize the extent of the problem, there is still a lot to learn about why they happen and what can be done to prevent them. Dr. Sotirios Parashos, Director of Research at the Struthers Parkinson's Center in Golden Valley, Minnesota, a Parkinson’s Foundation Center of Excellence, explains that preventing falls involves a team of professionals, including physici...
Stem Cells and Parkinson's
December 05, 2017 17:00 - 10 minutes - 14.4 MBStem cells – those cells that can give rise to so many cell types in the body – have been touted as the cure-all for a variety of diseases, including Parkinson’s. But to date, attempts at stem cell transplantation into the brain have fallen short. Parkinson’s is one of the most complex diseases, with a variety of motor and non-motor symptoms and an impact on many systems of the body. Just inducing a cell to make dopamine is not the whole answer. But stem cells are still useful for drug scree...
Can an Asthma Drug Prevent Parkinson’s?
November 21, 2017 17:00 - 19 minutes - 27.4 MBAlpha-synuclein is a protein in the human brain that is linked with the development of Parkinson’s disease. An important scientific paper came out in September 2017 describing how some common drugs, already approved by the Food and Drug Administration for other purposes, may lower the production of alpha-synuclein – and potentially protect against Parkinson’s. Dr. David K. Simon, Director of the Parkinson's Disease and Movement Disorders Center at Beth Israel Deaconess Medical Center in Bost...
Why and How to Participate in Parkinson's Research
November 07, 2017 17:00 - 9 minutes - 12.9 MBClinical trials – research studies that involve people – are key to medical advances. But sometimes it is hard to recruit and enroll enough participants to make the results meaningful. It is important for people with Parkinson’s disease to participate in clinical trials to help researchers find better ways to treat, and hopefully slow down or even stop, Parkinson’s. Some trials are short, lasting only a few weeks, while some can take years, but all trials aim to produce results that will lea...
Clinical Trials for Parkinson's
October 24, 2017 16:00 - 14 minutes - 20.1 MBTherapies are available to treat Parkinson’s symptoms and improve quality of life for people living with the disease. But we don’t yet have a way to slow or stop Parkinson’s progression, and that is why research is critical. Dr. Tanya Simuni of the Parkinson’s Foundation Center of Excellence at Northwestern University Feinberg School of Medicine says this is an exciting time for the development of Parkinson’s therapeutics. She explains the clinical trials process and describes some ongoing t...
Generic Drugs for Parkinson's
October 10, 2017 16:00 - 14 minutes - 20 MBGeneric drugs are a cheaper alternative to brand name drugs. But are they as effective? Once the patent on a branded drug expires, other companies are free to apply for approval of a generic version – a drug that acts in the body largely the same as the branded one. Dr. Rajesh Pahwa of the University of Kansas, a Parkinson’s Foundation Center of Excellence, describes how generics compare to brand name products and what to look for, and look out for, when getting a generic or making the switch.
What We’ve Learned from the Hispanic Parkinson’s Community
September 26, 2017 13:00 - 13 minutes - 18.7 MBWhen you have a chronic, progressive condition like Parkinson’s disease, there is always something new to learn. But access to information and resources about Parkinson’s varies for individuals and communities. Dr. Claudia Martinez, the Hispanic outreach coordinator at the Muhammad Ali Parkinson Center at the Barrow Neurological Institute in Phoenix, Arizona, a Parkinson’s Foundation Center of Excellence, describes the methods she uses to help Hispanic people with Parkinson’s get the best po...
Extending the Reach of Parkinson's Resources and Services
September 12, 2017 16:00 - 13 minutes - 17.9 MBUnfortunately, many communities do not have access to the most up-to-date information and high-quality resources on Parkinson’s disease, even in the biggest cities. Every community has its own culture and flavor, and community outreach programs must recognize these differences to be successful. To design appropriate programs, it is also crucial to have a trusted contact and champion within the community. Aaron Daley of the University of California, San Francisco, describes his center’s outre...
Young-Onset Parkinson's 101
August 29, 2017 16:00 - 11 minutes - 15.5 MBA diagnosis of young-onset Parkinson’s disease brings with it special challenges. For example, deciding how and when to disclose the diagnosis at work and to children can be difficult, not to mention coping with a progressive condition and trying to plan for the future. Social worker Elaine Book discusses these challenges and more, as well as techniques for dealing with them.
The Keys to Driving with Parkinson’s
August 16, 2017 14:00 - 11 minutes - 16.4 MBDriving is a complex task involving many physical skills and mental processes. Age, along with a chronic or progressive illness like Parkinson’s, affects these critical driving skills, making a driver less safe on the road. But giving up the keys is an emotionally charged issue. Lissa Kapust created DriveWise, a program that involves a multidisciplinary team of health professionals who do objective assessments of the many skills and mental abilities needed for safe driving.
A Vaccine for Parkinson's?
August 01, 2017 11:00 - 10 minutes - 14.4 MBThere are many drugs and therapies for Parkinson’s, but none halt progression of the disease. This is partly because we still do not understand exactly what causes Parkinson’s, so it is hard to figure out how to prevent it or slow it down. One potential target for new therapies is alpha-synuclein, a protein found in the human brain that is associated with the development of PD. Scientists are looking at ways to clear abnormal forms of alpha-synuclein from the brain using various immune thera...
Genetics as a Guide to Neuroprotection in Parkinson's Disease
July 18, 2017 16:00 - 16 minutes - 22.5 MBFor decades, most people with Parkinson’s disease have been able to control symptoms with levodopa and other drugs. But researchers have yet to find a way to protect neurons in the brain to slow down or stop progression of Parkinson’s. Dr. David K. Simon discusses how modern genetics can be a guide to developing new drugs that might preserve nerve cells and – ultimately – keep Parkinson’s from progressing.
New Levodopa Delivery Methods for Parkinson's
July 04, 2017 16:00 - 12 minutes - 16.7 MBMore than 50 years after its discovery, levodopa is still the most effective treatment for Parkinson’s, but some people experience “off” periods or dyskinesias with oral medications. Dr. Mark Guttman describes new delivery methods that promise to help with some of these problems, especially for people who have had Parkinson’s for many years. For example, levodopa infusions directly into the gut are currently available, and skin patches and special pills that stay in the stomach and release d...
How to Manage Parkinson’s “Off” Time
June 20, 2017 16:00 - 14 minutes - 19.7 MBParkinson’s can be unpredictable – symptoms can come and go or get better and worse throughout the day. These so-called “on-off” fluctuations (also called motor fluctuations) and dyskinesias can be troubling, but movement disorder specialists can help with the choice of medication, dosages, and timing. Dr. Irene Malaty explains more about what causes these changes and how you can work with your doctor to manage them.
The Importance of Good Nutrition for People with Parkinson’s
June 06, 2017 16:00 - 9 minutes - 12.8 MBNutrition is increasingly part of the conversation when it comes to good Parkinson's care. Dr. Bas Bloem describes how diet can help improve some of the symptoms of Parkinson's and optimize the effects of medication, and he offers tips on getting adequate nutrition.
The Benefits of Exercise for People with Parkinson's
April 19, 2017 20:32 - 10 minutes - 14.7 MBRegular exercise is essential for people with Parkinson's. Dr. Bas Bloem describes what is known about exercise and PD and what is still in the research stages, and he offers some tips on overcoming barriers to getting enough exercise.
The Parkinson's Foundation’s Role in Improving Standards of Care
April 19, 2017 20:24 - 16 minutes - 22.1 MBDr. Peter Schmidt of the Parkinson’s Foundation explains where people with Parkinson’s can go to receive the best interdisciplinary care and how the Foundation is improving standards of Parkinson’s care around the world. The Foundation's Centers of Excellence network and the Parkinson's Outcomes Project – the largest-ever clinical study of Parkinson’s – are key aspects of the discussion.
Early Warning Signs of Parkinson's
April 19, 2017 17:35 - 15 minutes - 20.8 MBIn this debut episode of Substantial Matters: Life and Science of Parkinson's, Dr. Michael Okun talks about early warning signs of Parkinson's and offers practical advice on how to proceed after a diagnosis.